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Crohn's Disease Forum » Your Story » Time for second surgery....


04-09-2015, 05:06 AM   #1
anmonk
 
Join Date: Apr 2015
Location: bangalore, India

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Time for second surgery....

I was diagnosed with Crohn's in the year 2102. Well being in India, the chances of hearing about this condition is uncommon, as a result in the beginning i was wrongly diagnosed for intestinal tuberculosis and underwent a surgery to remove the infected portion with no clue that it was Crohn's since the biopsy suggested it was TB (tuberculosis) which was also wrong. I also took the wrong treatment for 9 months.

Though in the beginning after the surgery i showed improvement.My condition started getting worst. That was the time when i had to visit a different doctor who after conducting several tests concluded that i was suffering from Cronh's diseases (CD).

I read about CD on the internet and had a small idea about CD. Meanwhile as expected i had to take an year break from my studies and it was during the worst time i could expect about a break. I was doing well in my studies and i was in my final year of under-graduation. My relationship with my girlfriend which was already in a troubled phase, broke up. I dint tell my girl friend about this disease as i was ashamed. I dint discuss it even with my friends for a long time. As having a rare disease in India is not welcoming to people. As a result of all this, I was completely depressed and again the stress took a toll on my body and the initial treatments dint help me. I visited a psychiatrist who told me i had started developing OCD (obsessive compulsive disorder) and i was in state of depression which was quiet obvious. After this i started to notice as a matter of fact i was actually becoming more concerned about the way i walk the steps and certain other patterns i followed. i could someup my life in one sentence " I HAD HIT THE WORST DOWNFALL IN MY LIFE".


Days just passed by life was monotonous, walking u in the morning having liquid diet during flare-ups which was there most of the time. People surrounding me other than family members thought i was mentally sick thus was troubling my parents with all this issues (remember i or my family members dint disclose that i had CD). Everyone started sympathizing me and all the advice began on how to over-come my situation (which actually made my situation worst, as i dint want sympathy). My family members and a couple of friends were the only people in my life who understood me.Especially my Mom who is my she really hoped i would get back to normal. She still believed in me. This helped me as i started to believe this was my fight and i had to fight this myself. Though all my dreams were shattered somewhere in me a small hope still existed that i could make it.


After 6 months of treatment with steroids, Monoclonal antibodies and several other drugs finally i started showing improvement and a colonoscopy confirmed my intestines were healing well. I got back with my studies and started securing good grades as well. Although life was getting back on track just a couple of days before my final exams a had a flare-up and was admitted in hospital. But this time i left no stone unturned i was determined to give my exams and complete my course. I studied in the hospital ( with people staring at me and doctors and nurses were kind of surprised). I finally gave my exams although i had to run to the restroom a few times in between the exam. I finally passed my under-graduation with distinction (wherein i still believe i could do a little better).

I enrolled myself for post-graduation studies in biotechnology in one of the best university away from my home town. I lived in a hostel and i passed my first semester with GPA of 9.50 on 10. I was really happy since i was under remission and could concentrate in my studies. I started attending second semester after one week of classes i fell sick a and had fistula issues which was treated with antibiotics (in my hometown since the doctor knew my history well)and i was felling better. I went back to university. After a couple of days i was feeling sick again and this time it was worst i could not eat or drink water i was vomiting bile. i dint have bowel movements for couple of days. I went back home and the doctor told i had obstruction and was asked to undergo colonoscopy with balloon to clear the obstruction. The procedure was done yesterday and i was told that i had two major narrowing in my bowel. Using a balloon was able to give a temporary relief but a second surgery is required anytime the obstruction happens again and its recommended to undergo surgery before the condition becomes worst....AS a result i had to take another break from academics.



Now i am more determined I will fight my way up and achieve my dreams. I believe that i am stronger than the disease. I believe i am strong. Now i am not ashamed of telling anyone 'YES' i have Crohn's. Coming so far there is no way i will stop my journey towards my dream. One more fight it is......


Thanks for reading my story. This is the first time i have shared my story on a social forum, feel's good......
04-09-2015, 11:19 AM   #2
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Thanks for sharing your story! I'm sorry that you had to deal with that misdiagnosis and that you have had to deal with all the issues of people not believing that your illness was real or physical and feeling ashamed of having Crohn's. I think a lot of people (while not necessarily dealing with the same societal view of illness) can relate to some degree.

It's so good to hear that you are now comfortable saying that you have Crohn's disease. I think that's very empowering.

Also very glad to hear that your mom believed in you all along. Moms are wonderful

Congratulations on finishing your degree despite all the ups and downs of dealing with Crohn's. It's wonderful that you are pursuing your education despite these setbacks in your health and I'm very glad to hear that you've had some remission but sorry to hear that you are needing surgery again.

Will you be able to have maintenance treatment after this surgery to reduce the likelihood of relapse?

Stay strong! And let us know how everything goes with surgery!
04-09-2015, 11:57 AM   #3
anmonk
 
Join Date: Apr 2015
Location: bangalore, India

My Support Groups:
Thanks for the response.
My physician suggested that I will be on maintaince therapy after the surgery and luckily the narrowing involves only small portions of my colon, so I wouldn't lose much of my intestines.

However, currently my parents are thinking about an alterative therapy mainly ayurveda since I have not met any ayruvedic doctor from the time I was diagnosed. I am taking a small chance just hoping I find positive response in ayurveda.Since its an holistic approach compared to allopathic treatment which treats only symptoms.
If I don't find any improvement in ayurveda, then surgery is the last resort. Kindly let me know if you know any person in the forum who has found benefits with ayruveda and also any suggestions of ayruvedic doctors who have an treatment for Crohn's.

I'll keep the forum posted regarding my decisions....
04-09-2015, 12:00 PM   #4
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
I did read this thread here which mentioned ayurveda. Good luck with whatever treatments you try and yes, do keep us updated!
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